Sunday, November 04, 2007

Unquestioned and Beyond Reproach

On the cover of today’s Oregonian, just below the “Duck Nation Flying High” article is an expose of what has become of many folks who were moved out of Fairview Training Center over the course of almost 20 years until its closure in 2000. As I have been saying for a long time, I don’t believe they’ve done so well. Of course , there are some people in this state who have been saying otherwise, but it is now official that their myth of Oregon being some kind of model around developmental disabilities is exactly that... a myth.

On March 27th of this year I wrote to 4 Oregon State Senators and 2 State Representatives. The subject line was: “EOTC close? Or stay open?” The email came on the heels of another that was sent to me the previous day from the Oregon Network; a group of self described “advocates” of people with developmental disabilities. They were insisting on the closure of Eastern Oregon Training Center, so that the people living there could move into group and foster homes in the community. My stated concern was that from the early 1980’s, when the state first began moving folks out of Fairview, until its closure in 2000, these people weren’t doing nearly as well as the advocates were leading people to believe. The letter itself follows...

Dear Elected Officials,

I opened an email this morning sent to me from the Oregon Network regarding the Eastern Oregon Training Center in Pendleton. I was asked to forward their talking points related to the Governor’s decision to suggest keeping the institution open for the next few years. I’m writing something different to you about my feelings in regard to this matter. I don’t like talking points.

First, I want to make clear my belief that the institutionalization of people with developmental disabilities is a big part of the problem we now face in our state. It was only a matter of time until people admitted that it was a mistake in the first place, and it was decided that change must occur. By the mid eighties the Community Integration Project (CIP) was instrumental in moving folks out of Fairview and into the community. Mostly in waves people were moved out until its closure in 2000.

What I would like to know is how these folks who were moved into the community have REALLY fared.

In the Background section of their “call to action” it says:

“Oregon does not need an institution; no one we have spoken with disagrees.”

Who have these folks spoken with? I’m quite certain that in the usual manner, a select group of people claiming to speak on behalf of ALL people with developmental disabilities and those who care about them in Oregon agree with each other. Nothing new there.

“There is broad-based agreement that people with developmental disabilities can and are being successfully supported in their communities all over Oregon”.

I agree these folks can and should be successfully supported, but disagree that they are. In the last year I have personally witnessed the finding that a profoundly, non verbal man’s thigh bone had been broken for months before it was discovered by accident at a hospital visit. No one at his group home had any idea how it happened. He was prescribed and given a pain reliever that he is allergic to. A personal friend of mine died of untreated cancer because her care team made medical decisions based on personal bias without seeing a prognosis until over 4 months after she was diagnosed. I don't know if a 2nd opinion was ever gotten. Both of these individuals came out of state run institutions in the eighties.

The “advocates” go on to talk about the Facts:

“Recent improvements at the institution have created living conditions similar to those found in any group home in the community – only these “homes” are not in the community, they are clustered together on the outskirts of town.”

The truth is that the vast majority of the more profoundly disabled people go to Alternative to Employment (ATE’s) day programs 5 days per week for a total of 20-25 hours. These programs have a consumer/staff ratio of about 3 to 1. Many of the participants require changing and assistance with eating a snack. Generally something comes up where more than 1 staff is called upon for assistance. Factor in a very unreliable LIFT transportation system, and they are lucky to actually be out in the community for more than 2 or 3 hours per week. The staffing ratio is even worse at home where some of the people I know are fortunate to go anywhere during the entire week. I don’t actually see much difference than what is described above. In fact, many community based group homes are located on the outskirts of town in Oregon.

“The 183 employees who work there are well trained, caring and dedicated, and well paid. It is no surprise that there is little turnover”.

This has a sour grape flavor to it. Though it’s true that state paid workers make a living wage, believe me; so do the crafters of this statement. Much more than state paid caregivers. The amazing piece in this is that in Oregon it’s not the people who call themselves "the advocates" who suffer financially, it’s those working directly with dependent individuals.

“The current cost of the institutional model of services is too high! There are more cost effective ways of providing high quality services to these individuals.The DD system cannot afford to waste money! There are too many unmet needs including resources for existing community programs and in-home support for families with medically involved children.”

In 1998 the "advocates" cried; “UNLOCK THE WAITLIST!” People who were not receiving ANY services were the reason Staley was settled. These same people chose to resettle and allow the state to retain the savings from Staley, rather than standing up for those still waiting. They got what they wanted for their families and friends and changed their mantra to “SAVE OUR SERVICES!”, abandoning those still waiting. As you can see they now want to improve the quality of what their family and friends receive or expand and add to what they already have, and no longer acknowledge the waitlist-elephant in the room.

Talking Points:

“People with developmental disabilities do not belong in institutions. They have a right to live in the community. In fact, they have lived in the community successfully for decades”.

I’m sure the crafters must be talking about THEIR families and friends because most of the folks I know are having a struggle living in the community.

“We do not need to spend $288,000 per person per year to provide people with developmental disabilities quality services.”

This IS a large amount of money. However, the $9600 per year for folks enrolled in Brokerage services is not enough money to assist someone in ”living well”within their community either. I haven’t heard much talk about that. Maybe there has been some talk, but how would anyone but an insider know?

“I support the transition of the current residents out of EOTC into a community setting and fully providing for their needs. Redirect savings from EOTC to the DD budget; use the savings to support people with developmental disabilities to live in the community.”

My question is this... if our state is FULLY providing for the needs of only a relatively few now, what difference will closing EOTC make to those who still have nothing? The state took $29,000,000 from brokerage savings and used it in other budget areas instead of Developmental Disabilities with these same people’s blessing. It will be different now because?? The state and/or "advocates" have yet to admit or acknowledge this reality, but that makes it no less a reality.

It’s my opinion that whatever is decided here, that a thorough and complete review of what has and is going on in the lives of people already deinstitutionalized in Oregon since CIP1 needs to be the #1 priority. I believe you’d find, as I say, that the rosey picture painted by the "advocates" is inaccurate at best. I also believe that until there is true system reform around developmental disabilities in Oregon, we’ll simply continue to neglect our most vulnerable citizens.

I'd appreciate someone forwarding this to the Governor. His "Contact" form only takes 1000 words...

Sincerely,David McDonaldDAWG Oregon

I only received one response from one of our elected officials. It simply said; “Dear David, Thank you for taking the time to write to me to voice your opinions and concerns about this important issue. I will take them into account when making my decisions.”I have no idea if one or more of the legislators I contacted were prompted to involve the Oregonian in getting to the truth of what happened with these people. After all... I only heard from one. But now the cat’s out of the bag. Now we can have some serious discussion about system reform. Now the advocates can stop trying to fool the public.